When you think of PKD, what do you picture in your mind? Is it the image with a normal-sized kidney in comparison to the football-sized PKD kidney polluted with cysts? Is it the unknown of what your future may hold for you while living with this disease? Or is it the concern for your family members who are affected with PKD? How about the relatives you have lost? Do you think of the hopeful day when a treatment and cure is found?
In honor of World Kidney Day and National Kidney Month, I would love if you would join me in an exciting social media campaign that I am working on with University Kidney Research Organization (UKRO). I am a national spokesperson for UKRO whose mission is fundraising to support medical research and education related to the causes, treatment, and eradication of all forms of kidney disease. On September 19, 2012, USC Keck School of Medicine and UKRO announced the establishment of the USC/UKRO Kidney Research Center (KRC). The Center aspires to be a premier center nationally for kidney research.
The initiative that me and UKRO are working on today and throughout the entire National Kidney Month is to put a face to kidney disease. We are living with one of the most common life threatening genetic diseases and when I say “PKD” to people, so many of them do not know what it means. I believe together we will change this. I have been delighted to see how many of you are speaking out and sharing your story through this blog. We all know someone fighting PKD and waiting for a transplant, a research breakthrough, and a much-needed cure. It is hard for me to wrap my mind around the figure of millions people worldwide who suffer from polycystic kidney disease. When I look at pictures of my grandmother who passed away at the age of 53 before I was born, my aunt who died when I was 15, my mom who is 56 and doing well with her original kidneys, my 36-year-old brother who is healthy with his original kidneys, and my dear 11-year-old nephew who has PKD, then it really hits home. Also, when I see other families battling this disease, I am given a personal connection that really pulls on the heartstrings. This is real and together we need to fight for our cause.
It would mean so much to me if you would join me in sharing pictures of yourself and your loved ones who are living with PKD by being a part of our special ‘Faces of Kidney Disease Image Wall,’ showing the diverse group of people fighting PKD. For details on how to take part in this simple yet powerful event, and to learn more of the other initiatives with this campaign, please visit: http://ukrocharity.org/events/on-world-kidney-day-2013-put-a-face-to-kidney-disease/
My goal has always been to share my triumph over adversity and put a positive face on PKD. I want people to not only see the ugly picture of what our PKD kidneys look like, but to see our beautiful faces who are living with those kidneys inside us. It allows others to make the connection of all of us who live with PKD and how we are the ones that need their support to find a treatment and cure.
When I think of PKD, what do I picture in my mind? I picture the millions of people worldwide that need support. I picture the departed loved ones that I have never met because of this disease. I think of my nephew and future generations who I hope will never have to endure the full effects of PKD. I picture hope, positivity, a treatment and a cure found. I hope you will join me in embracing PKD and be proud to share your photos to help make our ‘Faces of Kidney Disease Image Wall’ a powerful tool to help in the fight to end PKD.
Happy World Kidney Day my PKD family! I hope you are joining me today for PKD Challenge Day #14 and wearing a PKD t-shirt!